Outline

WHO-definitions of health and quality of life are encompassing and idealizing, but impractical from a clinical standpoint. Can the complete absence of disease really be an attainable treatment goal in a clinical setting? At the same time a major issue of debate is the clinical use of quality of life information. Very often these efforts dwell on technical or statistical improvements, such as computer-aided diagnosing or the specification of effect sizes. However, improvements in these respective areas are hardly helpful to overcome problems that are conceptual by nature. Our approach to make the quality of life concept suitable for the clinical arena is based on the following four premises: 1. A concept of disease-related quality of life (i.e., the patient is oriented to overcomean unfavourable situation). 2. Defined thresholds that allow distinguishing between acceptable quality of life and unacceptable symptom burden. 3. Availability of quality of life diagnostics that is both comprehensible and action-oriented. 4. Implementation of the quality of life diagnostics into routine patient care and availability of quality of life enhancing therapy options. The implication of this viewpoint is that a patient’s quality of life can only be understood in the context of his/her medical condition. To be more specific, a patient is described best in terms of three components: classical, mechanistic endpoints (survival, complication rates, laboratory parameters, imaging), patient-based or hermeneutic endpoints (quality of life, expectations, stigma), and a value judgement in order to decide which of these many possible measures is the most relevant one for a patient in a given clinical situation. The three component outcome analysis is necessary for recognising the relations between the various endpoints and for arriving at an empirically derived hierarchy (ranking). Based on this conceptual framework patients’ individual quality of life is presented in form of a quality of life profile that comprises ten major dimensions. All scores range from 0 (very bad) to 100 (very good), whereby 50 is regarded as the cut-off between acceptable and unacceptable/questionable score values. In an ongoing randomised trial a group of five experts (gynaecologist, psychologist, trial methodologist) uses this information together with the medical records in order to come up with specific therapeutic recommendations to improve the patients’ quality of life. Therapeutic options include pain therapy, physiotherapy, psychotherapy, fitness and nutrition, and social rehabilitation and are incorporated in a clinical path based on the current breast cancer treatment guideline. The findings of this randomised controlled trial promise to clarify the role that a conceptually and empirically grounded quality of life concept can play in the context of treatment guidelines for cancer patients.